Wow, it's been a busy couple of weeks. We had a great time in Ohio and Culley didn't miss a beat despite no OT for almost two weeks. He started preschool the next week so Finn, Culley, and I have been living in Denver three days a week for the past three weeks. Finn had his fifth birthday and I'm currently procrastinating making the final preparations for the party in two days.
We did do BioSET 2 weeks ago and it was really fascinating. Culley cooperated for over an hour by holding onto a brass bar while the doctor sent small amounts of electrical current into a meridian on his other palm. He seemed to enjoy watching and listening to the computer's response to each new waveform that was introduced. The results showed that he does, as we knew, have an allergy to dogs and cats but also to cattle, some molds and fungi and many types of feathers as found in down pillows. It also showed that he has some systemic inflammation and a decreased ability to release toxins from his body. In addition, he has a sensitivity to dairy :( My boys both LOVE milk! As a treatment to clear some of the allergies, Culley had to carry around a very small bottle of energized water. It sounds like hocus-pocus but if it works, I don't care what it is. We started referring to it as his "magic water" which was not easy to keep track of, in the care of a 3-year old. I switched to rice and coconut milk as a substitute for dairy but he couldn't stand it. Next I tried almond milk on both the kids and I thought it was pretty tasty. Culley would take a couple sips and be done with it and Finn practically gagged. Oh, well, there are other ways to get protein, fat, and calcium, right?The following week, Culley saw his audiologist who ok'd scheduling surgery for his second cochlear implant. I was hoping for the end of July so I was shocked when we found out it could be done in 9 days! We planned for him to go to preschool Tues-Thurs as usual then stay an extra night since the surgery would be on Friday. My mother, Gram, arrived this week to help out so the pieces were all falling into place. You know to worry when it all seems too perfect. After watching the fireworks on the 4th, Culley began complaining of pain in his ear, the one without the implant. Long story short, the next day we were back in Denver, it was draining fluid, he had an infection, surgery cancelled. His ENT informed us that he'd have to wait 6 weeks for surgery:( UGH!!
Well, now he can focus on preschool which is going very well. He had one day where what we're assuming is SPD (Sensory Processing Disorder) caused him to become withdrawn and act strange but otherwise the staff is pleased with his language development and level of engagement. At home, his language is finally taking off. He usually comes up with something new to say everyday so we are encouraged by that but his sensory seeking behaviors are on the rise again. His auditory/verbal therapist has been encouraging me to pursue more formal evaluations for him so we can hopefully figure out if his atypical behaviors and learning patterns are because of SPD or is there something else, like autism, affecting him? With these type of situations, it gets complicated. Diagnosing SPD is the job of an occupational therapist (we've had three), an autism screening should be conducted by a qualified child psychologist as far as I know, and there are very few of these professionals who also have experience with hearing loss and what effects it can have on learning and behavior. The OT evaluation we had scheduled three weeks ago for two weeks from now, is being cancelled by the hospital because our insurance company cannot guarantee coverage for such a thing. First I need to jump through a number of bureaucratic hoops to even get to the point where they will revealed whether they will cover it or not. My plate is full enough and I really like his current OT, whom I'd have to discharge immediately as the first hoop. So the formal OT eval has just been pushed off my plate like a nasty brussel sprout. Instead, I'm redirecting all of my energy into pursuing the behavioral evaluation and autism screening, and this group happens to know hearing loss. Which reminds me, there's an important phone call I need to make.
